Just the Thought of Travel….

I’m a good writer. I make excellent goat cheese pizza and salmon pinwheels. I have a perfect head for a hat.

But of all these talents and abilities—traveling is not one of them.

In fact, these days, the thought alone of getting on an airplane makes me mouth go dry and my stomach quake. We used to travel a lot when I was little.

And here are my sister and I on a boat about five minutes before we crashed it. That actually was a fun trip.

I only had a few bad experiences—like that time we took the train to Pennsylvania and I had the flu so bad that all my memories from the trip are in kaleidoscope vision. We had gone away on some Jewish holiday and I remember we’d gone to a temple for dinner and my mom had taken me to the bathroom at one point and when we walked back into the ballroom our table was completely on the other side of where I thought it was. And then the room just kept spinning like that all night.  I puked twice on the train ride home before we got derailed—and had to take two connecting flights to get back to Fort Lauderdale.

After 9/11 my fear of traveling became more severe. Getting me on a plane required multiple Ativan, but we still managed to go for a few visits before I really started to experience the worst of the PIDD and POTS these last few years.

Now I’ve noticed that any sort of motion or high-low movements make me sick. I couldn’t even get on the Finding Nemo ride at Disney World without losing it. Elevators going from one floor to the other make me feel like I’m falling 1,000 ft.  Some days my heart medicine doesn’t work and just going down the staircase gives me vertigo.

R.J doesn’t mind long trips to Orlando. He’s always cool.

Two years ago, R.J actually managed to get me on a plane with him, his mom, and his sister for a weekend trip to (you guessed it) New York. I took two Ativan, but as we got closer to our destination—the plane started to descend—but my head and stomach were about 10,000 feet up in the air still. Cue the SCREAMING and non-stop dry heaving into a paper bag for forty-five minutes until we finally landed. It was quite the scene, one I’m not keen on repeating any time soon.

Look how cute I looked before I started freaking out.

See, we were actually supposed to go to New York this October. We’d been planning it for months. We wanted to go for a week—maybe two, and explore the city, spend time with our families—it was going to be a great trip.

But by June I knew we would have to scrap the whole thing. When I was diagnosed with POTS I couldn’t imagine the doctor just snapping his fingers and getting my symptoms under control. It’s been months in the works, and most of my symptoms are still so over powering they control the majority of the hours of my day (and night.)

The topic of travel hasn’t been forgotten though, and RJ has brought it up so many times in the past few weeks that I feel like ripping my hair out. I feel terrible about scrapping our trip, but I feel worse still about the fact that the way my life is going—travel doesn’t feel like an enjoyable possibility like… ever.

admittedly the Long Island Railroad is a lot less terrifying than the plane ride.

I have it hard enough here, trying to manage my symptoms around my doctors, the hospital that knows me, my chiropractor, my family, the foods from the places I know won’t make me sick, the bed that I can always get a good night’s rest in….And between the vertigo, heart racing, nausea, fatigue, brain fog, joint pain, and constant fight to stay free of infection I’m supposed to get on a plane and spend days trying to fight my symptoms in a totally unfamiliar environment?

The whole idea of it makes me feel wigged out and totally unequipped.

We talked about going to Orlando for a weekend and it occurred to me that if we went to a theme park, I would have to use one of the electric scooters because fifteen minutes of walking would wear me out for the day. My immediate thought was: great, and then I’ll have to deal with onlookers giving me crap about not looking handicapped and taking advantage? Forget it!

It all just gets me so frustrated I get angry. It shouldn’t be so hard. I shouldn’t make it so hard.

Even though I know now that my symptoms are really a part of my disease—it doesn’t change the fact that stress amplifies them by a million percent! And working myself up over perceived danger, frustration, anxiety and concern just makes it all worse…

I think of all the things that could go wrong with my medicine, my body, the situations around me. I fear getting stuck on the tarmac for two hours and having my Ativan run out. I fear getting dehydrated and needing an IV while walking around NY C and not knowing how to get to the hospital. Hell, I fear walking around NYC and not being able to find a public restroom.

I fear embarrassing myself in front of strangers and R.J’s family—I fear anyone not understanding or taking actual offense to my illness.

I know my mom would tell me to ask something like “What are the possibilities that you could not put your energy into worrying and instead enjoy this opportunity?” or “What’s the value of holding on to that anxiety and frustration?”

And I’ve asked myself over and over to destroy and uncreate all of the misconceptions or judgments that I have about travel and fear and my body over and over again–and I’m just not coming up any lighter on the subject.

I know R.J want to travel and after a long talk tonight I know that he really believes that someday this is going to all be a cake walk for me—but today it is such a challenge, one that I really want to overcome for him.

This isn’t a tips/advice post just yet. It’s an I’m-scared-shitless-what-do-you-suggest post.

I’m also going to turn this over to my friend Liz who wanted to get post about her experience traveling with Crohn’s disease. Feel free to leave your best traveling advice in a comment below!

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2 thoughts on “Just the Thought of Travel….

  1. Carri

    Your mom would also say “start living, it’s almost over”. Sometimes as shitty as you feel , you have to take in to account that you are sharing your life experience with someone else. You both make sacrifices. One more then the other in most cases. If you make everything about your fears and your illness, then everything will be about your fear and your illness. What would it take to live in that 10 second increment of life? If you had 10 seconds to live what would you choose? Would it be to live in fear…or would it be to live? I know with your disease the choice always seems to be fight or flight. I would add one more “f” word to that choice. What would it take to have some “fun” today?

  2. Amy

    I have IBS in addition to a variety of other illnesses and I totally understand the frustration of traveling. and worrying about whether a bathroom will be close by. Sometimes even when I go out shopping, I first figure out where the bathroom is in case I need it. Once my husband made fun of me and my obsession with bathrooms and I read him the riot act. “Would you rather I just go ahead and shit down my leg in the middle of Michael’s? I’d rather not, thank you. I realize that YOU might have perfect bowel control, but some of us aren’t blessed that way. If you have a problem with me scoping out bathrooms when we shop, you can damn well shop by yourself.” He shut up after that.

    I also have to carry a lot of medical equipment when I travel – a CPAP machine and nebulizer for my severe asthma. Not to mention the myriad amounts of medicines that I have to take with me. Most of the time there is barely enough room for any clothes, so if I go on a trip that is going to be more than a couple of days, I have to take two suitcases- a big on and a smaller one. Once my sister decided to comment on this and ask me why I had to bring so much “stuff” for a one week stay. After all, she could pack all she needs in a backpack. I unzipped my bags and told her to take a good look inside. “Note the medical equipment. Until the Darth Vader suit is invented and I decide to wear it, I have to drag this stuff around because it KEEPS ME ALIVE. No I am not bringing 10 pairs of shoes. I barely have room for a couple of changes of clothes. So back off!” Yeah. I know about judgment, especially from one’s own family.

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